Blog: National Partnership for Action

African American

A generation ago, almost 15 percent of children in the United States born with sickle cell disease died before the age of two. Many more died in their teens. 1

Today, babies born with sickle cell disease face a far more promising future. Children and adults can benefit from treatment options that help mediate complications of the disease. According to data from CDC's National Vital Statistics System, the proportion of deaths from sickle cell disease among children decreased from 12 percent in 1979 to approximately 3 percent in 2006. Since the signing of the National Sickle Cell Anemia Control Act 41 years ago, considerable progress has been made in biomedical research, disease surveillance, and care coordination.

But as patients and families know all too well, barriers to care and quality treatment persist. Between 90,000 and 100,000 people in the U.S. currently live with sickle cell disease, making it the most common inherited blood disorder in the country. Minorities bear a disproportionate burden, with the disease occurring in roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births. And far too many have struggled to access the quality care that they need to manage the disease and live a healthy life.

By directly addressing barriers to care and coverage, the Affordable Care Act has created new opportunities for those living with sickle disease to access affordable, high-quality health insurance and medical services – opportunities that many may never have had before.

Because of the law, sickle cell disease and other pre-existing conditions can no longer be grounds for denial of coverage from health insurers – a provision of the law that would provide security to 129 million Americans with pre-existing conditions.

Young adults living with sickle cell disease can now stay on their parents' health insurance until the age of 26, ensuring smoother transitions from pediatric care to adult care.

In addition, screening for sickle cell disease among newborns is now one of the preventive services covered at no cost under the Affordable Care Act. Thanks to the law, approximately 71 million Americans can now access these screenings and other important preventive services without having to pay a co-pay or deductible.

The law is also helping community health teams to explore new opportunities for improved disease management through the Centers for Medicare & Medicaid Services' (CMS) Innovation Center – and expanding access to care through investments in community health centers, where nearly two-thirds of patients served are people of color.

Meanwhile, agencies across the Department of Health and Human Services are working to make the most of these opportunities. At the Centers for Disease Control and Prevention (CDC), researchers are studying how sickle cell disease is managed at the community level through a state-based project called PHRESH (Public Health Research Epidemiology and Surveillance of Hemoglobinopathies). Using data collected from the program, CDC is helping states build capacity to monitor health system changes stemming from the Affordable Care Act – giving them the tools they need to identify the most effective interventions, highlight quality measures, and zero in on the "hotspots" of chronic conditions where they are needed most.

At the Office of Minority Health, one of the office's strategic priorities – leading the implementation of the first-ever HHS Action Plan to Reduce Racial and Ethnic Health Disparities – includes strengthening the cultural and linguistic competency of the health and health care workforce to improve health care quality and reduce health disparities. And as implementation of the Affordable Care Act continues, the Office of Minority Health's outreach and education efforts in minority communities are helping to reach those living with sickle cell disease and others who stand to benefit most from the health care law.

Three years after its passage, the Affordable Care Act has touched the lives of millions of Americans – including the thousands living with sickle cell disease. And this is just the beginning. On October 1, millions of Americans will have a chance to enroll in affordable health insurance coverage through the new Health Insurance Marketplace, with coverage beginning as early as January 1, 2014. While the fight against sickle cell disease continues, the health care law is giving patients and families affected by sickle disease unprecedented opportunities for improved care and expanded coverage – and new hope for a healthier future.

Learn more about the Affordable Care Act and the Health Insurance Marketplace at
www.healthcare.gov.

These are exciting times. Today, technology allows us to advance knowledge and empower members of underserved communities with information at rapid speed and with minimal cost. Considering the use of smartphone and mobile apps may be an important solution to increasing participation and engagement of minority and underserved communities in patient-centered outcomes research and comparative effectiveness research. Patient-centered outcomes research involves research that brings both the patient and providers together for shared decision-making for better outcomes and determining the costs and benefits of one course of treatment over another.

According to the Pew Internet and American Life Project, minorities (along with young adults) are leading consumers of health information via mobile platforms. African Americans and Latinos are more likely to own a mobile phone than whites and outpace whites in mobile app use. African Americans are using Twitter to share information, especially about neighborhood events. This information should be leveraged by researchers to use mobile apps and smartphone technology in research engagement with minorities and underserved communities.

Taking the concept a step further, creating apps that deliver education and information from trusted members of communities – such as ministers, physicians and researchers – could increase wider participation because of the trust and relationships that are already in place.

As an example, an innovative research project to engage African American women in research is now underway. Women stay connected using a smartphone app to learn about breast cancer, receive messages about the importance of participation in clinical trials and connect with researchers who they select to work with.

Developing mobile apps to include education and resources about the benefits of participating in patient-centered outcomes research and topics of interest to minority populations could increase their participation and involvement. Consider the possibilities for raising awareness and advancing health equity in research through mobile apps:

Learning about clinical trials and why minority participation is important

Recognizing the benefits of participation in clinical trials

Understanding of the role of researchers

Using resources like Clincialtrials.gov to find appropriate trials

Understanding how the Institutional Review Board works to protect participants

Developers and researchers must be aware that patients, caregivers and other community stakeholders are key partners in the development of mobile apps, because mobile apps are being developed for their use to enable and increase their participation – and not solely for the use of the researcher as a recruitment vehicle.

In January, 2013, Regina Greer-Smith, along with a team of healthcare professionals, formed
The Midwest /Partners Patient Engagement Cluster, (MPPEC) resulting from involvement with
The Patient-Centered Outcomes Research Institute (PCORI), a non-profit organization created from the Patient Protection and Affordable Care Act in October 2012. MPPEC’s mission is to engage patients and researchers in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER).

We would all like to believe that where you are born does not determine or sentence your fate, but that’s only partially true. Birthplace can limit the care a newborn receives, the quality of nearby education or access to healthy food choices. Increasingly, researchers are also finding evidence of biological connections between early life experiences (including those inside the mother’s womb) and long-term health.

Last year, as I spent time conducting a research study on neonatal mortality in rural India and observing procedures at a tertiary-care hospital in the U.S., it became clear to me that the circumstances of one’s birth determines so much of what happens afterwards. As I walked through the neonatal intensive care unit listening to the beeping and hissing of machines that kept children who could fit into my palm alive, I was singularly aware of the great separation that exists after the moment of birth.

I was struck that the health of those babies is related to both the nutrition and stress levels of their mother while in the womb and access to health care once they are born. Many of the neonatal deaths I documented in rural India were attributable to factors linked to the types of stressors that preconception care tries to address.

This summer, during my internship with the Office of Minority Health Resource Center, I’ve written and edited resources for the Peer Preconception Educators program (PPE). The program seeks to train college students as peer educators on topics related to preconception health.

Preconception health care helps women and men take steps during their reproductive years to protect the health of a baby they might have in the future. Critically, it fills the gap between conception and access to prenatal care. Nearly one-fifth of pregnant women who give birth in the U.S. don’t receive prenatal care before the end of the first trimester, a figure that jumps to over a quarter for minority groups such as African Americans, Latinas and American Indians. Yet by that time, most of the developing fetus’ major organs have already formed. It also misses a critical window between four and 10 weeks of pregnancy when the fetus is most sensitive to maternal conditions and environmental exposures.

The Affordable Care Act (ACA) has recently offered new opportunities for preconception care. In addition to requirements that health insurance plans must cover women’s preventative services, at least one well-woman preventive health visit is covered annually, which includes preconception care. Other highlighted services include screening for gestational diabetes, testing and counseling for HIV, and screening and counseling for domestic violence. All are key components of the PPE curriculum and critical services for women’s health.

If we truly want to talk about ending health disparities, reducing infant mortality rates or giving every child in this country the same opportunity to be all that they can be, we need to actively promote preconception care. After all, why should circumstances before and during birth determine a person’s future?

According to estimates from the Centers for Disease Control and Prevention, 1 in 110 children in the United States is affected by Autism Spectrum Disorder (ASD), and the rates are rapidly increasing. ASD can affect human development in a variety of ways and may interfere with an individual’s social interactions. While no single cause of autism has been discovered, trends have shown possible relationships between ASD and certain other conditions such as Down Syndrome.

It can often be difficult for parents to realize that their child is autistic. Some children may, at first, appear to be shy or have difficulty focusing before receiving the diagnosis. Although relatively little is known about ASD, symptoms of ASD usually become most obvious during early childhood (2 to 6 years old). Diagnosing ASD can be complex, however, because many of its symptoms often coexist with other health problems such as seizures, gastrointestinal issues, sleep issues and attention deficit/hyperactive disorder (ADHD), and therefore may be associated with these other conditions.

An earlier diagnosis gives parents and medical professionals more time to build an education and therapy plan that will best cater to the child’s needs for the future. However, the social and environmental factors influencing autistic children can greatly impact their treatment plans and management as they grow into adulthood.

A recent study published in Pediatrics done by researchers from Massachusetts General Hospital (MGH), however, showed that there were racial and ethnic disparities in the number of autistic children who went to see a specialist. This study of over 3,500 autistic children found that while 37 percent of white children saw specialists, only 30 percent of African American autistic children received specialized care. The greatest disparity came in children who saw a gastroenterologist, with 14 of white children and only 10 percent of Hispanic children and 9 percent of African American children receiving care.

A 2002 study from the Journal of the American Academy of Child & Adolescent Psychiatry identified an additional inequality; Medicaid-eligible white children were usually diagnosed earlier than Medicaid-eligible minority children with autism.

Although exact reasons behind these findings were not cited in the studies, researchers from the MGH study have hypothesized as to why minority autistic children are less likely to receive specialized care. Possible explanations include health care accessibility and cultural competency issues that would prevent minority families from following up with specialists that they are referred to, and/or differing frequencies of doctor referrals to appropriate services. A paper that was published in early 2012 also found that there may be differences in autism symptoms between non-minority and minority children based on cultural and linguistic gaps between parents and health care professionals.

With the growing rates of ASD in the United States, it is important to notice the emerging disparities in our communities. We need to better understand some of the challenges that Hispanic and African American families may be facing when accessing services so that we can ensure that all autistic children are receiving the best quality care that they can.

To achieve wellness, it is important to consider social factors in addition to treatment and care in order to ensure health equity for all. Not only do we need to make health professionals more aware of the disparities that may be afflicting minority communities, we also need to ensure that minority communities are able to access all the services they may need.

Lupus is a devastating autoimmune disease that disproportionately affects women and people of color. Patients currently spend an average of four years and see three different physicians before this complex disease is correctly diagnosed. But with knowledge comes hope and, at an event in Washington, D.C. on May 16, 2013, the American College of Rheumatology's Lupus Initiative, supported by the U.S. Office of Minority Health, launched a free curriculum for health professionals and schools across disciplines to recognize the signs and symptoms of lupus to improve outcomes and reduce health disparities. Brenda Blackmon, a multi-Emmy winning New York journalist and co-anchor of WWOR's My9 10 o'clock news, moderated the launch event and shares her story of how her daughter, Kelly, was diagnosed with lupus. In 2008, Blackmon founded The Kelly Fund for Lupus, a non-profit organization to promote awareness and understanding of the disease, with emphasis on women of color.

Imagine sitting bedside in the Intensive Care Unit. A doctor walks over to you and says, "Your daughter is going to die. There's nothing more we can do. You need to give us permission to disconnect the respirator."

This scene is supposed to come from a movie. It could be a news story I read on the newscast any night of the week. But this was my life. The person in the bed connected to a respirator was MY daughter. And it was my turn to ask God to take my life instead of hers because I refuse to be in denial about this awful disease called lupus anymore. I now knew it could be life-threatening. And I was determined it was not going to take my child's life. After all, she just had a rash, some weight loss, a little fatigue, symptoms typical of college girls who work hard to achieve. She was going to law school. She was not going to succumb to this disease.

That was June 2007. It doesn't seem so long ago. I still anchor the news in New York. My daughter Kelly is back to what seems like a normal life. The doctors call her, "A miracle". She cannot run or wear very high heel shoes, but considering she couldn't walk at all for nearly two years, she's doing quite well. She couldn't speak at all and now she speaks before audiences about a disease that attacked her brain and nearly took her life. She doesn't remember the 52 days in ICU or much of the six months in rehabilitation. She does remember the wheelchair and walker and varied colored canes.

Lupus took more than a year of her young life. It's not the same for everyone. I've learned that through educating myself and stopping the denial. Now I am determined to educate others everywhere, especially in minority communities where it is whispered about or not discussed at all. Lupus affects an individual but it also affects families and friends too. And I wasn't the only one who didn't know a lot about lupus. Neither did many responsible for Kelly's care. Talk of harvesting her organs, doctors running out of options, and finally the realization and review of her case with this conclusion: Every lupus patient is unique in diagnosis and treatment. And, all patients, regardless of their disease, race, ethnicity, or social status should be able to get access to the right information they need for their care and treatment, which is why initiatives such as this lupus curriculum and The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care are so important.

I founded The Kelly Fund for Lupus, Inc., a 501c (3) organization that supports, serves and educates people living with lupus. And Kelly found a new purpose for her life. She first spoke about it to a group of young people at one of The Kelly Fund events. Here's an excerpt:

"I've learned to look at my lupus diagnosis as my teacher, and I know that this is a never-ending class.
My teacher shows up whether I want her to or not. The purpose of life is simply to live a life of purpose. Lupus education is my purpose. Lesson 1: When I'm trying to achieve something there are no limits, only expectations. Lesson 2: When you expect to do more, you will. Lesson 3: There will always be naysayers, defy the odds, surprise them. Lesson 4: Your true purpose prevails over any problem so remember you are one step away from using your gift on a higher platform."

Kelly took over as President of The Kelly Fund for Lupus last fall. She completed an Executive Philanthropy non-profit leadership training program.

Kelly and I both have a new purpose for our lives -finding a cure for lupus, no more denial.

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The NPA works to achieve health equity -- the highest level of health for all people. This blog is a venue for professionals from all fields and sectors to share their thoughts on pressing issues, news and events pertaining to health equity. Follow and participate in this candid discussion.